Recruitment and ethical considerations for groups

There are a number of different group activities you can use to gather feedback from people who have dementia, including focus and service user groups, workshops, electronic voting, and mystery shopping.

Is a group discussion or activity the method for you?

Yes

• To discover people's personal and common experiences through their stories, feelings and ideas.
• To dig a bit deeper than you can in a survey. 
  if you're open to people influencing each other's contributions. 
• If you're open to discovering things you were not anticipating hearing about. The unique perspective of people living with dementia may help reveal unconscious bias, unintended barriers and discrimination in how services are provided.

Maybe not

• If there's a high risk that one or two people will dominate the conversation.
• If the people with dementia you want to learn from are unable or unwilling to participate in a group.
• For people who may not feel able to share their experiences in front of others.
• For people who find it more difficult to find words or produce speech (depending on how the group is Chaired).
• For people who cannot keep up with the pace of conversation. 

In all cases

Follow our guidance on how to recruit people affected by dementia and ethical considerations.

Specific additional considerations for seeking feedback on experience from groups

• Consent

  • Make potential participants aware in advance of what the group will be discussing, and how, so that they can make decisions about whether they want to be involved.
  • Consider whether what you want to ask about might be distressing for anyone, and if so, how to manage that, but don't make assumptions that people won't want to take part where people have capacity to decide whether or not to be involved.
  • Follow good practice for process consent - allow the person to withdraw from the activity at any point if they are unwilling or unable to continue to participate.

• Confidentiality and data protection

  • Tell the people participating in the groups about how you will protect their privacy. Explain that their responses will be anonymised, treated confidentially and not sold on to third parties.
  • if you do want to use or share something they say in a way that identifies them, get their permission about doing this.
  • Beware of inadvertently disclosing participant medical information to other people at group activities.